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

Transcription

1 Involvement of People with Developmental Disabilities in the Operation of UCEDD Programs September 15, pm ET

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

3 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

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

5 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/HIPAA clearance Pay grade steps Person dedicated to support self-advocates

6 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 selfadvocate cannot be learned in any university course

7 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 March Serve on advisory boards

8 Involving Families: Grupo Salto Support group for Hispanic families of children with autism with over 325 families Monthly Saturday meetings at UCEDD SALTO 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

9 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

10 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

11 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, MI, IL

12 My Story - Mitchell 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 i Teach LEND Students i Community Leadership i Research projects i WIHD Community Advisory Committee i Report activities in NIRS

13 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

14 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

15 Family Leadership in Training Pre-Service Training Director of LEND Family Partnerships Other Family Faculty LEND Family Specialist Trainees Major Focus on Family Partnerships Parent Partners in Health Education Family Mentoring in Chronic Care Rotation Training Curricula/Products Family Partnerships and Cultural Competency Family Partnerships Directory (LEND/UCEDD Networks)

16 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

17 The CAC at WIHD Bylaws: 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

18 The CAC at WIHD (continued) Recruiting and Supporting CAC Members with Disabilities Americorps Volunteers; SANYS; 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!

19 AUCD Council on Community Advocacy (COCA) 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

20 Questions? Institute on Disability and Human Development Website: Westchester Institute for Human Development:

21 Thank You! You will receive an anonymous follow up survey. We d appreciate your input. Anne Riordan: ariordan@aucd.org