Diversity Fellow Project, Daniel Ekman
Self-Advocacy Discipline Competencies and Objectives
Self-Advocacy Discipline Competencies and Objectives [download]
Project Narrative
1. Please describe your activities during your Fellowship experience. Describe your final capstone project(s).
During the Diversity Fellowship, I participated in many tasks. I did a poster presentation at the national AUCD conference, November 2016, entitled: “What is the Future of Self-Advocacy Leadership? Defining Competencies and Skills for Future Self-Advocate Leaders”. Developing leadership competencies and curriculum was my Diversity Fellowship Capstone Project. Throughout the year, I sought feedback on this document and refined it based on that feedback. See Appendix A.
I helped to plan, implement and teach the Advocate Leadership Academy, offered through the New Mexico Developmental Disabilities Planning Council (DDPC), a Center for Development and Disability (CDD) state partner organization. The Academy is significant because the competencies were adapted for use in the curriculum and also formed the basis of a self-assessment of the leadership skills of the participants. I also attended Diversity Fellowship collaboration meetings between the personnel from the CDD and the DDPC. I mentored Self-Advocate Fellows within the LEND Program, I recruited self-advocate fellows into the LEND Program and raised awareness about the program among self-advocates. I sent out a questionnaire to DDPC board members with disabilities that I know about achieving meaningful participation on boards and committees. I shared information about the LEND competencies and the Advocate Leadership Academy to a wide range of audiences such as participants at the National Association of Councils on Developmental Disabilities, other Diversity Fellows and AUCD C20ouncils such as COCA. All of these activities will continue after the Fellowship is officially over.
2. Who did your project inform, help, influence or impact? (UCEDD, individual, community, state) How?
The self-advocacy competencies and mentorship project was designed to impact multiple groups. The first group was self-advocates. Oftentimes, self-advocates either do not know about programs such as New Mexico LEND or do not understand how those programs are related to them. Thus, the self-advocate misses out on some great learning opportunities and the programs lack the knowledge and perspectives of self-advocates. The same is true for boards and committees. The New Mexico LEND program in particular wanted to create a specific discipline and create an opening for self-advocates. However, the competencies transformed this opening from simply being there to having a purpose and expectations attached to their participation in the program. Along with mentoring and a questionnaire given to self- advocates on meaningful participation in boards and committees, this transforms self-advocate participation from an add-on or afterthought into an essential part of any program that benefits self-advocates and the programs themselves.
Not only did the New Mexico LEND program benefit from this project, but other organizations were able to utilize the competencies. The Center for Self-Advocacy Program at the New Mexico Developmental Disabilities Planning Council began an Advocate Leadership Academy in 2017 with the goal to create regional resource networks of self-advocates throughout the state of New Mexico. This program took the competencies and edited them so that they could serve as the basis for the curriculum, self-assessments and individual goals for its participants. The competencies were intentionally released as a working document so that various organizations could take the documents and modify them to use within their own organizations. Thus, the document is a community work that can continuously be edited and improved for use by a diverse range of community organization.
3. Why did you choose to work on that project(s)?
Originally, this project began as a part of my participation as a Self-Advocate Fellow with the New Mexico LEND program. The original idea for my participation was to establish self-advocacy as a discipline within the LEND program and create an opening where the unique knowledge and skills of self-advocates could be used and recognized. My participation was the first step in establishing this new discipline and to opening the door for self-advocates to regularly participate in the program.
The creation of the competencies was based on a document that established competencies for family faculty in a different LEND program. I worked with my mentor, NM LEND family faculty Phyllis Shingle, to create a similar document for the NM LEND program. The creation involved communicating with a variety of people in the disability community not only during the creation, but after the final working draft was completed. Thus, the Diversity Grant was a natural extension of this LEND project because it allowed me to continue through mentoring and engaging with self-advocates to refine the ways in which the NM LEND program could include self-advocates in all facets of their program with a focus on advocates who were racially and ethnically diverse. Through this, we also were able to put together an approach that can be replicated in a diverse range of programs. For me, this is important because I believe that my goal as a mentor and leader is to lift up self-advocates and advocates so that they can go further and become better than myself. This project aligns with that goal.
4. What did you gain from being a Diversity Fellow?
Through my experience as a Diversity Fellow, I have been able to reach out and gain feedback on my competencies and on inclusion for self-advocates through venues that I would not have otherwise been able to access. Not only did I send my competencies out to other Fellows, but I was able to share my project with others at the AUCD conference. The document ended up being used by programs outside of New Mexico, which could not have happened without the Diversity Fellowship. I also was able to work on including individuals with disabilities in the LEND program through mentoring and working directly with self-advocates. Through this experience, I gained a more complete understanding of what is necessary to create a truly inclusive place within a program such as LEND.
This experience also directly impacted my own program, as the DDPC Center for Self Advocacy was able to use the competencies as a core element of the DDPC Advocate Leadership Academy curriculum. Through this experience, I have seen an example of how the competencies can be modified and transformed in order to benefit a program that is quite different from LEND. This gave me a far broader understanding of the significance of the competencies document. We also created a direct link between self-advocates in my program and the LEND program through direct collaboration between the CDD and the DDPC. Thus, I have been able to allow other self-advocates to share in the transformative learning experience that I had through NM LEND.
5. How will this experience impact your education or career decisions?
On a formal level, my education and career decisions are set for the near future. I have worked at the NM DDPC’s Center for Self Advocacy Program since 2012 and was a VISTA Volunteer there from 2009-2011. I also received an MA in Special Education in 2014. Thus, I have been involved with the same program for almost 10 years. It is hard to imagine myself doing anything else or even working with other organizations or communities. I have gained so much from the disability community in New Mexico that it is hard to picture myself anywhere else.
That said, it will impact the path I take within my career. This experience has shown me a lot about the disability community and the organizations outside of New Mexico. Before this experience, I knew mostly about the self-advocacy organizations around the country, but did not know about the UCEDDs or DD Councils. This project has helped me see how many roles there are within the disability community and how these organizations are structured in different states. Long term, since I have a wife with a 16 month old son, this could help me stay involved with the disability community or find new opportunities if circumstances force us to leave New Mexico.
6. What are your future goals? Where do you see yourself 5 years from now?
Honestly, my main goals are related to my family. I have been married for 6 years and my son will be 17 months in late September 2017. I remember when I was younger that I always wanted a family, but never believed I would be able to have one due to my difficulties with social skills and social communication. Thus, my main priorities for the future are being a good husband and a good father. Therefore, many of my other goals such as professional goals are contingent upon what is best for my family.
Professionally, I hope to grow the self-advocacy movement and available community resources in New Mexico. There is a systems change coming to how the NM Developmental Disability waiver services are provided through the CMS Final Rule and I am currently working on a steering committee in New Mexico for their initiative called Know Your Rights. I hope that I am able to develop and build a statewide network in which self-advocates in various communities take the lead in advocating and establishing community-based resources. I see myself becoming more of a mentor or supportive figure while self-advocates in various areas take a leadership role. The self-advocates are the ones who receive the services and have to deal with the service system and community on a daily basis. Thus, they are the best advocates and I want to promote their rightful place at the forefront of any advocacy or systems change.
7. What recommendations do you have for other Fellows?
I spent a lot of my time during the Diversity Fellowship working within my own project and did not reach out to other Diversity Fellows as much as I should have. I think one recommendation I work make, particularly for self-advocates, is to really interact with the Diversity Fellow cohort. I have interacted with a couple of individuals from the previous year, but did not interact as much as I should have with the other Diversity Fellows due to time constraints. I know that much of the learning and growth I had during the LEND program took place during this interaction and I am sure that it is very much the same with the Diversity Fellowship. I also would encourage self-advocates not to spend too much time second-guessing why they are a part of the Diversity Fellowship or if they belong. I know I did that and it did not help with the aforementioned issue.
As far as the work on the project itself, my advice would be to seek input from as broad a coalition of individuals as possible. This means a diverse group self-advocates, professionals, family members, and friends. Your project will be only as good as those with whom you share it and gain input. Sharing your work not only makes it stronger, but allows it to have a larger impact on your community. Also, be open to new learning experiences and perspectives that will come from community members. Their views should drive the work that you do and it is the best way to ensure that your work is directly linked to the needs and wants of your community.