Involvement of People with Developmental Disabilities in the - PowerPoint PPT Presentation

Involvement of People with Developmental Disabilities in the Operation of UCEDD Programs September 15, 2010 4-5pm ET

Webinar Agenda • Introduction of Presenters • Institute on Disability and Human Development • Westchester Institute for Human Development • Questions/ Comments • Wrap Up

Role of Self-Advocates at UCEDD: Self-Advocacy Specialist • Training in self-advocacy – Vote Project – Advanced Leadership Academy – “Future is Now” – Advanced Directives – Covey Leadership – Gateway Center on Self-Determination – Sexuality Training

Role of Self-Advocates at UCEDD: Self-Advocacy Specialist • Liaison with State/ National Groups – SABE – People First – Alliance – MTARS • LEND trainee

Supports for Involving Self-Advocates in UCEDDs • Someone to support in trainings • Address money issues ahead of time • Support person for traveling • Feeling comfortable with support person • Examples of bad support • What I would like – IRB/ HIP AA clearance – Pay grade steps – Person dedicated to support self-advocates

Including Family/ Self-Advocate “Discipline” in LEND • Current policies in health and education promote collaboration and partnership between professionals, families, self-advocates • Family/ Self-Advocate discipline trainees provide interdisciplinary teams with an invaluable perspective • The experience of being a family member or self- advocate cannot be learned in any university course

Projects and Activities of Families and Self- Advocates in LEND • Clinical and didactic training • Leadership and Policy Projects – Self-Directed Supports – Disability Rally Day – Wrote Special Olympics grant – Petition for Rosa’s Law – Disability Awareness M arch • Serve on advisory boards

Involving Families: Grupo Salto • Support group for Hispanic families of children with autism with over 325 families • Monthly Saturday meetings at UCEDD • SAL TO al Arte provides art, dance and music for children with autism during meetings • Coordinated by Clinic staff and run by volunteers • Parent training on best practices in managing behaviors at home

Involvement of CAC in UCEDD • Chaired by family/self-advocate • Use of small committee • Support persons (explaining, help in writing) • Orientation • Involved in strategic planning • Review publications (briefs), research protocols • Review website

Sibling Leadership Network (SLN) • Provides siblings of individuals with disabilities the information and support to advocate with their brothers and sisters. • UCEDD Role: hosted at UCEDD, chaired by Katie Arnold (sibling), helped found SIBS-Supporting Illinois Brother and Sisters (IL chapter), sponsored conferences

Sibling Leadership Network Activities • White Paper on Research, Supports & Advocacy • SABE rep on SLN Board to ensure the organization has self-advocate perspective • National/ Regional Conferences • Chapters – TN, OH, NY , WI, M I, IL • www.siblingleadership.org

M y Story - M itchell Levitz My Role: Staff member, Consumer Issues Specialist The kinds of things I do: i Help develop curricula, such as My Health, My Choice, My Responsibility http:/ /community.wihd.org/ Page.aspx?pid=339 i T each LEND Students i Community Leadership i Research projects i WIHD Community Advisory Committee i Report activities in NIRS

Reasons why it is important to involve self-advocates in the UCEDD • Perspective of people with disabilities • Advice from self-advocates • Demonstrates the strengths, gifts, and competencies that people with disabilities have • Shows UCEDD’s commitment to independence, productivity and inclusion • Develop and support leaders

Family Leadership & Involvement • Volunteers on Advisory Committees • Faculty and Staff (>65%) • Parent-staffed (and parent-directed) services – Service Coordination for Early Intervention – Medicaid Service Coordination for Adults with DD – Resource Centers • Special Education Parent Center • Parent to Parent • Self-Determination Resource Center

Family Leadership in Training • Pre-Service Training – Director of LEND Family Partnerships – Other Family Faculty – LEND Family Specialist Trainees – M ajor Focus on Family Partnerships – Parent Partners in Health Education – Family M entoring in Chronic Care Rotation • Training Curricula/ Products – Family Partnerships and Cultural Competency http:/ /community.wihd.org/ Page.aspx?pid=512 – Family Partnerships Directory (LEND/ UCEDD Networks)

Importance of Family Partnerships & Family Leadership in the UCEDD • Part of the Culture at WIHD UCEDD • Unique experiences, similar challenges • Perspective, passion and commitment • Peer to peer networking • Opportunity to give back • Opportunity for leadership

The CAC at WIHD • Bylaws: 13-21 members; Chair and Vice-Chair; meet 4 times/ year • Standing Agenda Items – Discussion of one UCEDD Project/ Program Area – COCA Report – Mitchell – New Member Recruitment – DD Council Update

The CAC at WIHD (continued) Recruiting and Supporting CAC Members with Disabilities • – Americorps Volunteers; S ANYS; Independent Living Centers; staff referrals – WIHD employees cannot be CAC members – encourage participation by the person’s support staff (if applicable) – always send meeting materials ahead of time and electronically – pay for transportation and child care if necessary – structure discussion/ questions to encourage participation – involve members between meetings – come and invite their friends to come, to events, conferences, or tours – CAC Retreat – FOOD!

AUCD Council on Community Advocacy (COCA) • http:/ / www.aucd.org/ template/ page.cfm?id=41 • Self-Advocates and Family Members from each UCEDD • Networking, Peer Support, Discussion of Important Issues • Helps AUCD increase involvement of people with disabilities and families in the UCEDD network • Helps people with disabilities and families speak up to be sure their perspective is heard • List Serv – please join and come to the AUCD Conference this Fall

Questions? Institute on Disability and Human Development Website: http:/ / www.idhd.org/ Westchester Institute for Human Development: http:/ / www.wihd.org

Thank Y ou! • Y ou will receive an anonymous follow up survey. We’d appreciate your input. Anne Riordan: ariordan@aucd.org