Brothers and sisters share the longest relationships on earth. However, sibs are often not thought of when we talk about future planning for individuals with disabilities.
SibsJourney held their annual conference for young adult siblings at Brandeis University over the June 20-22 weekend. The three young women who founded SibsJourney, Renee, Claire and Ellie, did an amazing job of pulling it all together, from fundraising to organizing. It was great that Don Meyer, the creator of Sibshops, and Kate Arnold, director of the Sibling Leadership Network ( SLN) were on board.
They certainly understand that college-aged sibs are often overlooked and may need extra support, as most are in a transitionary period in their lives. Most have never spent significant time away from their sibling and are beginning to feel more responsible for their sibling’s care and wellbeing. The goal of the conference was to help sibs learn about resources, ranging from medical to legal to personal, and to join the national movement of young adult sibs. Sibsjourney believes that siblings have tremendous power to advocate for quality services for their siblings in the midst of budget cuts and shrinkages. Ultimately, they hope to create a community of sibs that can learn from and rely on one another.
Cindy Haddad, CFP®, on behalf of the Massachusetts Dibling Support Network (MSSN) and Alex Nadworny,CFP®, both siblings of brothers with special needs themselves, were privileged to present at the conference. This is a time at which individuals with special needs are transitioning and there are many questions in the minds of the brothers and sisters. Where will their sibling work, live, play? What role will their parents have? What role will they have? Both Cindy and Alex found the organization and effectiveness of the conference and the compassion with which resources and stories were shared to be very impressive.
We will share a resource of our own for siblings, our SibTips. SibTips is a combination glossary of terms and acronyms used in the disability community and practical tips for siblings to know.
Here's a sample:
An Advocate is someone who focuses on ensuring that the rights of a person with disabilities are met and not violated. Sometimes these services include special education, housing discrimination, abuse and neglect. They may be a paid advocate or a family member or friend who has the best interest of the individual at heart.
SibTip: In the absence of a formal guardianship for your sib, you may want to become his or her advocate informally or formally with a Power of Advocacy. This will allow you to participate in the decision making aspects of their life particularly with residential, employment, and provider agencies. You won’t have any legal authorization, but you may already be acting as their “advocate” by standing by them as a sib.