Self-Advocacy Discipline Competencies - AUCD

Self-Advocacy Discipline Competencies

For additional information, visit illinoislend.org or contact [email protected] The Illinois LEND Program is an interdisciplinary leadership training program funded by the U.S. Department of Health and Human Services—Health Resources and Services Administration (HRSA). Grant Number: T73MC11047.

Table of Contents History............................................................................................................................................. 3 Position Statement .......................................................................................................................... 4 Introduction to the Self-Advocacy Discipline ................................................................................ 4 Recommendations for Supports for Self-Advocacy Trainees ........................................................ 5 Training in the Discipline of Self-Advocacy .................................................................................. 6 Qualifications .............................................................................................................................. 6 Competencies .............................................................................................................................. 7 Demonstrate an understanding of the history of the disability rights movement in the United States ....................................................................................................................................... 8 Demonstrate an understanding of a variety of intellectual and developmental disabilities and the difficulties they may face .................................................................................................. 9 Demonstrate an understanding of how to practice advocacy at varying levels – from individual to systemic ........................................................................................................... 10 Demonstrate the knowledge of family centered care ............................................................ 11 Demonstrate the knowledge of culturally competent practice .............................................. 12 Demonstrate a working knowledge of services and supports at local, state, and national levels ..................................................................................................................................... 13 Demonstrate the knowledge to help educate health care providers in their understanding of the disability experience and perspective ............................................................................. 14 Demonstrate the ability to participate and lead in an interdisciplinary team ........................ 15 Demonstrate an understanding of self-determination ........................................................... 16

Self-Advocacy Discipline

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History The self-advocacy movement in the United States is a human rights movement of and by people with intellectual and developmental disabilities (IDD). Although origins of the movement date earlier, in the US, self-advocacy grew significantly during the 1970s and 1980s. Self Advocates Becoming Empowered (SABE) is the largest self-advocacy organization and was incorporated in 1994.1 According to SABE, self-advocacy involves people with disabilities working together to take charge of their lives, fight discrimination, and advocate for justice. “Self-advocacy teaches us how to make choices and important decisions that help us to live our lives and be more independent. It teaches us about our rights and our responsibilities.”2 People involved in self-advocacy learn to advocate for themselves by building a network of supportive individuals and gaining the confidence to speak up for their beliefs. Similar to other grassroots movements, self-advocacy serves both as a source of empowerment for people with IDD and as a way that concerted individuals can organize and advocate to improve the lives of individuals with disabilities, their families, and their community.2 Self-advocacy means speaking up for yourself, standing up for your rights and making your own decisions without the influence or control of other people. It also means that people are controlling their life choices, financial resources and supports.3 A key aspect of self-advocacy is self-determination. Although self-determination can hold multiple meanings, a consistent theme is that self-determination is about people self-directing their lives in positive ways.4 SABE defines self-determination as, “being able to choose where we work, live, and our friends; to educate ourselves and others, to work as a team to obtain common goals; and to develop the skills that enable us to fight for our beliefs, to advocate for our needs, and to obtain the level of independence that we desire.”5 The self-determination of people with IDD is viewed as the right of an individual to direct their own services in order to improve their quality of life, which aligns with LEND’s overall goal to improve the health of people with disabilities through comprehensive training of future leaders in the field of disability. In 2010, Illinois LEND (IL LEND) added the independent discipline, Self-Advocacy. At that time, Director, Ann T. Cutler, MD, LEND Director; Kristen Connelly, MSW, Associate Director; and Amie Lulinski, MS, Didactic Training Coordinator, recognized that self-advocacy 1

Caldwell, J. (2010) Leadership development of individuals with developmental disabilities in the self-advocacy movement. Journal of Intellectual Disability Research, 54(2), 1010-1014. 2 Self Advocates Becoming Empowered. (1991) Mission statement. Self Advocates Being Empowered. 3 University of Illinois at Chicago, Department of Disability and Human Development. Retrieved from, http://www.ahs.uic.edu/dhd/selfadvocates-family-professional/advocacy/ 4 Nonnemacher, S. L., & Bambara, L. M. (2011). “I’m supposed to be in charge”: Self-advocates’ perspectives on their self-determination support needs. Intellectual and Developmental Disabilities, 49(5), 327-340. 5 Interdisciplinary Technical Assistance Center. (2011) A new perspective: Illinois LEND includes a self-advocacy discipline. Association of University Centers on Disability, retrieved from http://goo.gl/vvZ4gk


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and self-determination are necessary components to improve the health and well-being of people with disabilities. It became clear to the LEND administrative team that creating a separate selfadvocate discipline was the right thing to do. Tia Nelis, who has over 20 years of leadership and self-advocacy experience, was the perfect trainee to represent Self-Advocacy in the program first year. Since 2010, IL LEND has had three self-advocacy trainees graduate from the program and two trainees on track to graduate in the spring of 2014.

Position Statement Since the 1990s, the self-advocacy movement has been rising in prominence and has proven itself as a key player in leadership and advocacy, not only in the disability rights movement, but the disability policy community at large. The IL LEND Self-Advocacy Faculty and UCEDD Self-Advocacy Specialist, Tia Nelis, advocates for the purposeful inclusion of self-advocates, particularly people with IDD, because their voices are not often heard and they offer a unique and incredibly valuable perspective. Self-advocacy trainees’ bring the lived experience of disability to the classroom. This experience cannot be learned through traditional educational settings or any type of simulation. LEND programs largely focus on clinical training in regards to Autism Spectrum Disorders and other neurodevelopmental disabilities. The IL LEND program is unique in that it recognizes the importance of having self-advocates involved in the program; so the education of trainees can shift from talking about people with disabilities to talking among people with disabilities. IL LEND believes it is important to have independent family and self-advocacy disciplines. Although both family members and self-advocates may have similar goals of improving the lives of people with disabilities, their perspectives about the lived experiences can differ. Differentiating between both disciplines recognizes that family members and self-advocates offer unique, but equally valuable viewpoints. As trainees, self-advocates bring the disability point of view to LEND. In addition, self-advocates contribute by educating other trainees about how to interact with people with disabilities. One such example is language; self-advocates help people understand about the preferred language that should be used to talk to people with disabilities. A LEND alumni from the physical therapy discipline, Haviva Siegel, commented, “[Tia] has not only clarified the LEND trainees’ perspectives about people who have a disability, but has supported presenters in being more aware of how they speak about disabilities, medical issues, and to re-examining how they interact with clients and families.”2 Training self-advocates builds a more comprehensive and educated support network. Selfadvocates serve as supports for other advocates and as role-models for parents who have been mostly been told of their child’s restrictions or impairments. “[Tia] has put a face to why we are in the program. Also for me, as a Family Discipline trainee, she has underlined the importance of me encouraging my 13-year-old, who has a Self-Advocacy Discipline

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neurodegenerative disability, to use his ‘voice.' I always tell him that it is his strongest asset.”6 -- Family Discipline Coordinator, Gina Jones, 2011 Self-advocates benefit from participation in the LEND program. From attending clinical sessions, trainees learn the clinical point of view about impairment and diagnosis. With this knowledge, self-advocates are better able to partner with healthcare providers and advocate in clinical settings. Clinical information is also helpful to self-advocacy groups as they diversify to include people with different types of disabilities. “While self-advocates may have significant knowledge of policy, leadership, and how to advocate for issues that may come up in legislation, [they] don't have as much experience in the clinical setting. LEND provides an opportunity to see this side of disability. This experience gives self-advocates a way to learn more about other disabilities than their own so when they work with other self-advocates they will know how to include and support them in other projects or groups they do.”6 According to IL LEND’s first self-advocacy trainee, “A lot of what people know about disabilities comes from books, rather than first-hand experiences with people with disabilities. I think it is important for self-advocates to be involved in LEND to help provide the perspective of people with disabilities.” 6 Ultimately, both self-advocates and other discipline trainees benefit from learning together – true to LEND’s interdisciplinary nature.

Recommendations for Supports for Self-Advocacy Trainees As with all LEND applicants, available accommodations and necessary supports need to be clearly specified. Programs should outline ahead of time, what their funding and program will support. For example, LEND programs do not reimburse for travel to and from didactic and clinical sessions for any discipline. Therefore, the IL LEND specifically outlines to selfadvocacy applicants that they will not be reimbursed for and are held responsible for transportation expenses to and from programming. Below are recommendations of how to include self-advocacy trainees in the LEND program. According to the IL LEND Self-Advocacy Faculty, the first and perhaps most crucial step is “believ[ing] that self-advocates can be LEND trainees.”6 LEND must “value the viewpoint of the self-advocate, giving them the opportunity to present in class about disability issues and selfadvocacy.”6 Suggested Supports  Follow up with the self-advocate regularly to make sure things are going well  Ask if they need or prefer accessible materials including large print or plain language  Discussion time for issues of concern 6

Nelis, T. (2010) How to include self-advocates in your LEND program. Association of University Centers on Disability, retrieved from http://www.aucd.org/template/news.cfm?news_id=5891&id=17


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      

Strong mentorship with the LEND self-advocacy faculty member Assistance in interpreting more clinical and medical terminology Ability to work on assignments in groups Ability to complete assignments in alternate formats (i.e. written vs oral) Support from fellow trainees in class or on assignments Stipend for participation Confidence building activities

Recruitment of Self-Advocacy Trainees Like all disciplines, the application process for the Self-Advocacy discipline is a competitive. Selection of a Self-Advocacy trainee, similar to selection of trainees of any discipline, should be choiceful. As required by the Family Discipline, applicants to the Self-Advocacy discipline are required to demonstrate leadership potential. Participation in the LEND program should not be the first-step in leadership development, but rather should assist trainees to evolve into higher leadership roles. Like the Family discipline, Self-Advocacy applicants are not required to be graduate students. IL LEND’s website has a video explaining the self-advocate discipline and has a separate application for self-advocates. (http://ahs.uic.edu/dhd/lend/self-advocacy/) For a sample of how the IL LEND graduate student application was adjusted for self-advocacy trainees, see the link below: http://www.ahs.uic.edu/dhd/lend/howtoapply/

Training in the Discipline of Self-Advocacy The following details specific qualifications of IL LEND trainees in the Self-advocacy discipline. Each LEND program needs to retain flexibility to implement these and other requirements. We strongly recommended that every self-advocacy trainee complete training in, and demonstrate understanding of, specific identified skills. Qualifications 1. Identify as a self-advocate and/or someone with an intellectual or developmental disability 2. Be available to participate in all aspects of the LEND curriculum 3. Commitment to advance LEND principles and practice 4. Demonstrated experience in advocacy leadership preferred


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Competencies IL LEND refers to the MCH core competencies found below. The Self-Advocacy discipline is still evolving and suggested competencies are some that IL LEND has used and some that are being considered. I.

II.

III.

Self 1. MCH Knowledge Base 2. Self-Reflection 3. Ethics and Professionalism 4. Critical Thinking Others 5. Communication 6. Negotiation and Conflict Resolution 7. Cultural Competency 8. Family-Centered Care 9. Developing others through Teaching and Mentoring 10. Interdisciplinary Team Building and Practice Wider Community 11. Working with Communities and Systems 12. Policy and Advocacy

Suggested self-advocacy competencies/activities – trainee will demonstrate: 1. An understanding of the history of the disability rights movement in the United States 2. An understanding of a variety of intellectual and developmental disabilities and the difficulties they may face 3. An understanding of how to practice advocacy at varying levels – from individual to systemic 4. The knowledge of family centered care 5. The knowledge of culturally competent practice 6. A working knowledge of services and supports at local, state, and national levels 7. The knowledge to help educate health care providers in their understanding of the disability experience and perspective 8. The ability to participate and lead in an interdisciplinary team 9. An understanding of self-determination


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Competency 1.0 Demonstrate an understanding of the history of the disability rights movement in the United States

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Suggested Learning Activities/Indicators 1.1 Identify 5 important events 1.1.1 Attend a core seminar in the history of the presentation on the topic Maternal Child Health 1.1.2 Assigned reading material Bureau (MCHB) on the history of MCHB 1.2 Identify 5 components of 1.2.1 Attend a core seminar The Individuals with presentation on the topic Disabilities Education Act 1.2.2 Assigned reading material (IDEA) on the history of MCHB 1.3 Identify 5 components of 1.3.1 Attend a core seminar Americans with Disabilities presentation on the topic Act (ADA) 1.3.2 Assigned reading material on the history of MCHB Objectives


Additional Supports

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Competency 2.0 Demonstrate an understanding of a variety of intellectual and developmental disabilities and the difficulties they may face

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Suggested Learning Activities/Indicators 8.1 Assist people with 8.1.1 Model for the person with disabilities and family a disability how to share members in effectively their needs with team communicating their needs members to interdisciplinary teams 8.1.2 Assist people with disabilities and their family in articulating their goals and needs to the team 8.2 Become familiar with the 8.2.1 Attend core seminar and definitions of major clinical presentations on developmental impairments the topic 8.2.2 Completion of clinical assignments Objectives


Additional Supports

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Competency 3.0 Demonstrate an understanding of how to practice advocacy at varying levels – from individual to systemic

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Suggested Learning Activities/Indicators 3.1 Be able to talk about the 3.1.1 Conduct internet search on history of the self-advocacy prominent self-advocates movement including 3.1.2 Talk with the selfprominent figures in the advocacy coordinator movement about the movement 3.2 Explain the differences in 3.2.1 Read about successful selfadvocacy at an individual, advocacy efforts and group, and systemic level identify critical leadership practices Objectives


Additional Supports

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Competency 4.0 Demonstrate the knowledge of family centered care

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Objectives 4.1 State the definition of family centered care 4.2 Explain the benefits of family centered care


Suggested Learning Activities/Indicators 4.1.1 Locate the most recent definition on the MCHB website 4.2.1 Hold a discussion with other trainees or faculty about the importance of family centered care

Additional Supports

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Competency 5.0 Demonstrate the knowledge of culturally competent practice

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Objectives 5.1 Define cultural competence

5.2 Examine own attitudes and values to be respectful of others

5.3 Explain why people first language is important and be able to encourage others to use it

Suggested Learning Additional Supports Activities/Indicators 5.1.1 Review definition of cultural competency http://leadership.mchtrainin g.net/?page_id=126 5.2.1 Complete a self-assessment AUCD checklist Organizational Cultural Competence Survey: instructions: http://www.aucd. org/councils/multic ultural/ cult_comp_instructi on.htm, survey: http://www.aucd. org/councils/multic ultural/ Cultural_Competen ce_Survey. htm. 5.3.1 Review the terms through the internet and information on self-advocacy: http://ahs.uic.edu/dhd/lend/selfadvocacy/ http://www.thearc.org/who-weare/positionstatements/rights/self-advocacy


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Competency 6.0 Demonstrate a working knowledge of services and supports at local, state, and national levels

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Objectives 6.1 Identify at least 5 resources that could support people with intellectual and developmental disabilities 6.2 Describe various local and regional supports for families and people with intellectual and developmental disabilities

Suggested Learning Activities/Indicators 6.1.1 Attend relevant classes 6.1.2 Contact local advocacy organizations

Additional Supports

6.2.1 Identify the available support systems in the community

6.2.2 Describe how they would help a real or hypothetical family


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Competency 7.0 Demonstrate the knowledge to help educate health care providers in their understanding of the disability experience and perspective

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Objectives 7.1 Demonstrate an understanding of the experiences and challenges of people with intellectual and developmental disabilities


Suggested Learning Activities/Indicators 7.1.1 Complete an advocacy training program 7.1.2 Share their personal story with other trainees

Additional Supports

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Competency 8.0 Demonstrate the ability to participate and lead in an interdisciplinary team

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Suggested Learning Activities/Indicators 8.1 Explain to other members of 8.1.1 Complete an advocacy the interdisciplinary team some training program of the challenges and barriers 8.1.2 Share their personal story people with intellectual and with other trainees ( or developmental disabilities face present at another setting) 8.2 Provide support for people 8.2.1 Use active listening skills with disabilities and their and jargon free language families who are having trouble 8.2.2 Follow up with people to understanding information ensure comprehension presented to them 8.3 Support people with 8.3.1 Use active listening skills disabilities as they interact with and jargon free language the interdisciplinary team 8.3.2 Make sure the team is listening to the person with the disability and valuing their opinions 8.3.3 Assist the people with disabilities as they articulate their goals and priorities to the team Objectives


Additional Supports

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Competency 9.0 Demonstrate an understanding of self-determination

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Objectives 9.1 Demonstrate understanding about self-determination


Suggested Learning Activities/Indicators 9.1.1 Read about selfdetermination from selfadvocacy materials 9.1.2 Speak with self-advocacy coordinator about how self-determination can be actualized 9.1.3 Explain to fellow trainees about how to support self-determination

Additional Supports

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