As a passionate advocate for my brothers with disabilities and mental illness and people like them, sometimes I get so pissed off and discouraged. How the hell can I make a difference, especially here in Illinois where we are 48th in spending on people with disabilities? Recently, I attended a conference that made me feel empowered and gave me some hope. It was a meeting of siblings of people with disabilities. Some of them met with Senator Kennedy and Senator Sherrod Brown before the conference. Senator Kennedy expressed "enormous interest" in our cause and the unique situation of siblings.
The newly-formed Sibling Leadership Network convened on November 9 and 10th with over 80 brothers and sisters of individuals with intellectual and developmental disabilities. This meeting brought together researchers, policymakers, sibling advocates, self-advocates, funders and other committed professionals in the disabilities field. In the two days we spent together we heard substantive and inspiring presentations from a wide range of experts. My favorite was a presentation by Marvin Moss an amazing self advocate. His story, if I have his permission, will be my next diary.
Among the group's immediate next steps will be the drafting of three white papers outlining issues of importance to siblings. The working groups will work on the areas of policy and advocacy, service and supports and research. The ultimate goal is to create opportunties for siblings to partner with government and service providers to ensure the highest quality of life now and in the future for their entire families.
As we approach the perfect storm of aging parents caring for who knows how many baby boomer adults with disabilities,siblings are stepping up to protect the legacy of parents who put the first supports and services in place. Many of us are already the caregivers, supporters and advocates for our sibs. We are learning the hard way what happens when Mom and Dad are no longer here. We are not ready for typical aging baby boomers much less baby boomers with disabilities.
In Illinois we are incorporating the first non profit organization that has been created by siblings to support,educate and advocate for siblings. Check out our website it is a work in progress. http://www.sibsnetwork.org/