A letter to all SibNet members from Anne and Don

Dear SibNet member,


We are writing you off the list because soon we will be participating in the first-ever national meeting of the Sibling Leadership Network.  This will be a conversation among adult sibs, researchers, and leaders from federal agencies and organizations serving people with developmental disabilities.


We want your voice represented at this event. 


We very much hope you can join us in Washington, DC on November 9-10.  If these dates are open, you can find details and a registration form on http://tinyurl.com/yuovv9  The cost is a very reasonable $75 until 10/19/07 and $90 thereafter.  SibNet’s own John Kramer is available for questions about the event, too.  He can be reached at: 312-996-7988; jkrame3@uic.edu


However, if you can’t
join us, we still want your voice represented.


SibNet is a unique community, with a singular perspective.  We want to share your perspective with those who attend the SLN event.  Here’s how you can add your voice, your thoughts:


Below, you will see items from the agenda, along with questions we would like you to respond to.  You can answer as many—or as few—as you’d like.  When responding, please reply “inside” this email, directly below the questions asked.  After each comment, please also include your name and the state you reside in.  If you are comfortable with doing so, please add your age. It will provide readers with context for your remarks.  Once you’ve made your comments, please send them back to us.  We’ll cut and paste all SibNet members’ remarks and prepare a document that we’ll distribute at the Sibling Leadership Network event. 


Thank you!!!


Anne and Don


PS—Here’s how Anne would respond to three of the questions below.


         Issues of childhood

Life was confusing for me as a very young child. I didn’t understand what was going on related to my older brother and why he was being taken to many doctors as my parents tried to figure out why he was delayed in his development. My parents were sad and upset and I didn’t know why. I would like researchers to look at ways for service providers to help parents to support young families members during these often traumatic times. Anne Guthrie, Seattle WA, age 57


         Issues in adolescence

My brother’s behavior became difficult to control and it made life at home harder- especially for my 3 younger sibs who were more subjected to his tantrums. How can families utilize approaches to behavior management at home that are used effectively at school? Anne Guthrie, Seattle WA, age 57


         Issues in adulthood  

Family life was strained due to lack of adult services which meant my parents were often at meetings a lot to help advocate for services and were otherwise needing to center their lives around my brother’s needs. Many families still struggle to find day activities or work for adult family members with DD. Can researchers help develop model programs to address this? Anne Guthrie, Seattle WA, age 57



Agenda for Sibling Leadership Network Meeting—


In the morning of Friday, November 9th, we’ll be reviewing and ratifying the mission statement, purpose, and core values of the Sibling Leadership Network.  Here’s the proposed mission statement:


Sibling Leadership Network Mission Statement: The mission of the Sibling Leadership Network is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issues important to them and their entire families.


Questions for SibNet members:

  • Is the mission statement clear? 
  • Remembering that mission statements should be concise, is there something that should be changed or added?


Here is the proposed Sibling Leadership Network purpose:


The purpose of the Sibling Leadership Network is to promote a broad network of siblings who share the experience of disability and people concerned with sibling issues by connecting them to social, emotional, governmental and provisional supports across the lifespan to enable them to be effective advocates with their brothers and sisters, themselves and their families and empower them to be change agents


Questions for SibNet members:

  • Is the purpose clear?
  • Is there something that should be changed or added?


The entire afternoon will be spent discussing “Sibling Research across the Lifespan” and “Developing a National Research Agenda.”  Specifically there will be speakers discussing their research on:

  • Issues of childhood
  • Issues in adolescence
  • Issues in adulthood
  • Examining future planning issues
  • Impact of Sibshops


Question for SibNet members: If you had a chance to have a cup of coffee with one of these researchers and wanted to share with them what you thought would be compelling issues in the above categories, what would you say?  Specifically, what should researchers investigate regarding:

  • Issues of childhood
  • Issues in adolescence
  • Issues in adulthood
  • Examining future planning issues
  • Impact of Sibshops


The session “Developing a National Research Agenda” will feature representatives of federal agencies, including Alice Kau (of the Mental Retardation and Developmental Disabilities branch of the National Institute of Child Health & Human Development), Margaret Campbell (of the National Institute on Disability &Rehabilitation Research) and Margaret J. Giannini (Director of the Health and Human Service Office on Disability). 


Questions for SibNet members:

  • If you could spend some time with these or other researchers as they craft a national research agenda regarding sibling issues, what would you tell them? 
  • What should they spend their time researching? 
  • What sort of research would help you as you attempt to lead your life and help your sib who has a disability?  What would you have them investigate?


The morning of Saturday, November 10th, will feature a panel of leaders from national organizations serving with people with disabilities.  Included will be Sue Swenson of The Arc of the United States; Beth Finkelstein, Marvin Moss,  The Arc of Ohio; Joe Caldwell, RRTC on Aging with Developmental Disabilities Department of Disability; and Kim Musheno, Association of University Centers on Disabilities.  There will probably be other representatives of agencies representing the interests of people who have Down syndrome and autism. 


Questions for SibNet members:

  • What would your message—as a sib—be to leaders of national organizations serving people with disabilities? 
  • What could they do to help you as you attempt to lead your own life and help your sibling who has a disability? 


Much of the remainder of Saturday will be devoted to developing a national policy agenda regarding sibs.   Among the things we’ll talk about include:

  • educating lawmakers, policymakers, and bureaucrats about siblings and their concerns;  
  • incorporating siblings into family policy; and
  • siblings’ role with regard to aging people with developmental disabilities.


Questions for SibNet members: Please look at the above bullet points.  What should lawmakers, policymakers, and bureaucrats remember about siblings—and know about you and your life–as a national policy agenda regarding siblings is developed?


Thank you, thank you, thank you for sticking with this!  And thanks even more for your thoughts on this!  Please mail your thoughts to donmeyer@siblingsupport.org.


Wishing you all the best—and hoping you can join us in DC (if only in spirit!)—


Anne Guthrie and Don Meyer

Sibling Support Project




Don Meyer
Director, Sibling Support Project

A Kindering Center program
6512 23rd Ave. NW #213
Seattle, WA 98117

online training calendar: http://plus.calendars.net/sibshop
Our Brothers, Our Sisters, Ourselves

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