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:

iHelp develop curricula, such as My Health, My Choice,

My Responsibility http:/ /community.wihd.org/ Page.aspx?pid=339

iT

each LEND Students

iCommunity Leadership iResearch projects iWIHD Community Advisory Committee iReport 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

• u!
• Y
• u will receive an anonymous follow up
• survey. We’d appreciate your input.

Anne Riordan: ariordan@aucd.org