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Consumer Advisory Council

Council Members

History

In October of 2007, the Rural Institute on Disabilities was awarded a Project of National Significance from the Administration on Developmental Disabilities at the U.S. Department of Health and Human Services. The purpose of this award was to create an information and resource center around Transition. MT-TIRC, the Montana Transition Training, Information and Resource Center, was formed, and an advisory board was created to provide direction and input to the center's activities. The MT-TIRC Board was made up of at least 51% youth with developmental disabilities, along with parents and representatives from schools, the Montana Developmental Disabilities Program, the Montana Council on Developmental Disabilities, Disability Rights Montana, Vocational Rehabilitation, the Office of Public Instruction, PLUK, and Social Security.

MT-TIRC has been committed to developing and disseminating information that improves the transition outcomes for youth with developmental disabilities, particularly inclusive transition outcomes (in the community, alongside same-aged peers without disabilities) in the areas of education, employment, housing and recreation. As we worked with families, youth, schools and agencies we found that they needed help envisioning what an inclusive life as a young adult could look like. Where would they live? What would they do for fun during the day? Where would they work? Would they take classes or pursue a degree? What help would they need to do these things and who could help them?

The MT-TIRC Advisory Board provided input on training topics for webinars and conference presentations, presented during webinars and at conferences, and disseminated transition information while staffing conference exhibitor tables. The board members also identified various projects and issues they wanted to address and formed work groups to design products and publications. The three main work groups included: The Emerging Leader Project, the Portfolio Project, and the Mental Health Work Group.

Emerging Leader Project

The Emerging Leader Showcase was developed to help youth, families and schools create a vision for what life in the community could look like for young adults who have ongoing support needs. The Advisory Board formed a work group to come up with recruitment ideas, processes for interviewing leaders and capturing their stories, and strategies to disseminate information about the project and high quality transition outcomes and possibilities across the state and nationally.

Activities of the work group include:

  • Presentations at conferences by Emerging Leaders about Emerging Leaders (2008-2012 CEC conferences, with a keynote presentation in 2011; 2008 Montana Youth in Transition & MAR Conference; 2009-2012 Montana Youth in Transition Conferences; 2011 Integrated School Mental Health Conference)
  • Presentations using Portfolios at middle and high schools by Emerging Leaders to other youth about Emerging Leaders
  • Webinar presentations to national audiences by Emerging Leaders
  • Work group members developed Emerging Leader recruitment Public Service Announcements, which were sent to two public television stations
  • T-shirts! The Advisory Board selected the logo and shirt color. They participate in the sales of T-shirts at various events and conferences. The shirts advertise the Transition and Employment Projects web site and sale proceeds are used to support members to attend meetings and conferences
  • Developing content for the Emerging Leader section of the Transition and Employment Projects web site
  • Recruiting leaders and writing articles for newsletters that compiled the 2009 and 2010 Emerging Leader stories
  • Capturing and disseminating a monthly Emerging Leader story through the Montana Transition Listserv
  • Providing Emerging Leader contact information to the Governor's office and to the Director of DPHHS so they can send personal letters to each Emerging Leader thanking them for sharing their story
  • Creating an Animoto video about Emerging Leaders in 2011 and sharing it at various conferences

We continue to recruit stories of young people with developmental disabilities who live, play, learn and/or work in inclusive ways in their community. We especially want to hear about youth and families who are self-directing their supports and creatively blending resources. These supports can be organized and managed by a funded adult agency or family and friends. We are also looking for examples of creative funding such as blended services and natural supports, use of SSA work incentives, privately funded services or some sort of traded or bartered supports. Instructions for nominating an Emerging Leader can be found on the Transition and Employment Projects web site.

Portfolio Project

The Portfolio Project work group was made up of seven youth who wanted to create their own Representational Portfolios and help Transition and Employment Projects staff pilot long distance mentoring in developing Portfolios. The group met by phone and Internet to receive training, review each other's work, and receive feedback on their own Portfolios.

  • Three youth presented their portfolios at the 2011 Transition Conference in Great Falls.
  • Three youth and one parent presented information and three Portfolios at a nationwide webinar on 8/16/2011.
  • One youth Advisory Board member has presented her Portfolio at her Individualized Education Program (IEP) meeting, to a middle school special education class, and to her high school special education class.
  • One parent and the Rural Institute Transition and Employment Projects Director used the Portfolio to represent a student to prospective employers and secured positions for the student at the University of Montana Math Department and Reading Lab, and at Prudential Missoula Real Estate.

Mental Health Work Group

One of the youth Board members identified mental health concerns as a major (and mostly unaddressed) issue for young adults with developmental disabilities. Advisory Board members agreed to form the Mental Health Work Group. Three youth and the PLUK representative created a brochure to educate mental health professionals, families, and young adults about the unique needs of this population. PLUK formatted the brochure. Once the brochure was completed and disseminated in June 2011, work group members were encouraged to continue their efforts through the state YouthMOVE organization.

The Advisory Board provides direction for and participates in numerous other activities. Webinars, the Montana Transition Listserv, and Technical Assistance Provision are a few with significant impact not just in Montana but across the United States.

Webinars

Beginning in 2006, the Transition and Employment Projects staff has offered teleconference and webinar training free of charge to national audiences. When the MT-TIRC Advisory Board was formed in 2007, the Board assumed an active role in identifying and selecting relevant topics, assisting with training content development, and co-presenting at the sessions. Based on a recommendation from the Board, a separate "Youth Track" of webinars geared specifically toward a transition-age audience was developed. Since 2007, nearly 2500 people have registered to attend the Transition and Employment Projects webinars. All sessions are archived at http://ruralinstitute.umt.edu/transition/trainingcalend.asp.

  • In 2012 and 2013, quarterly webinars will be produced for Children's Special Health Services. The CAC members will provide input on the topics and content, and will co-present at some of the webinars.
  • In 2012 four webinars were offered by the Transition and Employment Projects including: "Preparing Youth for Community Employment - Part 1 and Part 2," "Parent to Parent - Preparing Your Child for Transition Success," and "Partnering with VR for Successful Transition."
  • In 2011, a total of nine webinars were offered free of charge to a national audience. Topics included: "Overview of SSI and SSDI"; "Dating and Healthy Relationships" (in collaboration with Summit Independent Living Center); "Social Security Work Incentives"; "Navigating Montana's Developmental Disabilities Program" (in collaboration with PLUK and the State Developmental Disabilities Program); "Parent to Parent: Critical Skills for Your Child to Develop"; "Portfolios: What are they? How can they be used?"; "Using Portfolios for Health Care Needs"; "Identifying and Communicating Support Needs"; and "Work Experience in Rural Areas."
  • One youth Board member keynoted the 2011 CEC conference and the Region V PTAC conference in Colorado. Visit http://www.youtube.com/watch?v=H3vRSongO34 to view his CEC presentation.

Montana Transition Listserv

On a regular basis, the Advisory Board invites interested individuals to join the Montana Transition Listserv and receive transition-related information.

  • Transition web blasts ("Transition Tidbits") are sent to the 1200 listserv members at least monthly.
  • "Featured Emerging Leader" stories are shared monthly via the listserv.
  • Other agencies send transition-related information to project staff for dissemination to listserv members.

Technical Assistance Provision

Technical assistance is provided mostly by phone and email to families, schools and agency staff around the areas of transition and employment. Transition and Employment Projects staff frequently receives calls about: Transition Assessment for youth with a significant impact of disability, IEPs, Social Security Work Incentives, resources and services, and inclusive practices.

On occasion, on-site assistance is provided to youth and families, most commonly with job development efforts or participation in an IEP meeting. Advisory Board members provide guidance, ideas, suggestions and support to project staff and sometimes directly to families or youth.

Leadership Development of the Board Members

Young adult members learn how to run meetings, suggest and develop agenda items, and prepare to respond to issues on the meeting agendas. They also identify areas of need and propose ways the Board might tackle meeting those needs.

  • One youth Board member keynoted the 2011 CEC conference - the presentation was recorded and posted to YouTube (https://www.youtube.com/watch?v=H3vRSongO34) and to the MT-TIRC Facebook page .
  • Another youth Board member presented at the Integrated School Mental Health Initiative conference.
  • Two Board members took the initiative to get Emerging Leader recruitment Public Service Announcement on local television.
  • Members are co-facilitating meetings, sharing information, leading discussions, taking roll call, identifying guest speakers they would like to attend future meetings, and more.
  • Two Board members wrote their own Emerging Leader stories.
  • One parent Board member used her daughter's Portfolio to negotiate three jobs with assistance from Rural Institute staff.

Evolution of the MT-TIRC Advisory Board to the Rural Institute Consumer Advisory Council

The funding from the Administration on Developmental Disabilities ended in September 2010. The work of MT-TIRC, including the MT-TIRC Advisory Board, the Emerging Leader Project, and several other Advisory Board work groups, has continued with a mixture of funding from the Rural Institute on Disabilities CORE grant; the Montana Council on Developmental Disabilities (10/2010-9/2011); Montana's Children's Special Health Services (2/2011-12/2011 and 10/2012-6/2013); and fee-for-service activities completed by the Transition and Employment Projects staff. As of 10/1/11, the MT-TIRC Advisory Board was renamed the Consumer Advisory Council (CAC) for the Rural Institute on Disabilities to reflect the expansion of its responsibilities beyond the Transition and Employment projects into other Rural Institute projects and activities.

The Council currently consists of four parents of youth with DD; seven youth/young adults with DD; and representatives from Vocational Rehabilitation, Disability Rights Montana, PLUK (Parents, Let's Unite for Kids), the Montana Youth Leadership Forum, schools, MonTECH, the Social Security Administration, and Children's Special Health Services. All five regions of the state are represented. The Advisory Council meets quarterly.