Massachusetts sibling Support Network

1. Massachusetts sibling Support Network Massachusetts Sibling Support Network, 2011

2. No Siblings Left Behind: Supporting Siblings of Children with Disabilities Massachusetts Sibling Support Network

3. Agenda • The Sibling Experience • Supporting Siblings Throughout their Life • The Sibling Movement • Questions and Answers Massachusetts Sibling Support Network, 2011

4. Why siblings? People with disabilities are living longer than before Many people with disabilities now live at home until their parents can no longer provide care Funding options at the state and government level are decreasing Massachusetts Sibling Support Network, 2011

5. Factors that impact the sibling experience Massachusetts Sibling Support Network, 2011

6. Diverse Findings Massachusetts Sibling Support Network, 2011

7. Unusual challenges, unusual opportunities Massachusetts Sibling Support Network, 2011

8. Proactive planning: Giving Siblings a voice Massachusetts Sibling Support Network, 2011

9. Agenda • The Sibling Experience • Supporting Siblings Throughout their Life • As Children • As Adults • As Caregivers • The Sibling Movement • Questions and Answers Massachusetts Sibling Support Network, 2011

10. Looking back: What siblings say… “In some ways, my childhood was completely typical – I had friends, I joined activities, I was my own person.   In other ways, it was completely atypical.  I never talked about my brother, never brought friends home, and never wanted his life to intersect with mine outside of our house.”  DM “I learned very early how to judge people.  Most of my friends never came to my house.  Only my closest friends were welcome because I knew I wouldn’t have to explain the locks on everything, and all the other things we had in the house to keep my brother safe.”  MP “One day when I was 14, my 10 year old brother streaked through the house when some friends were over. I made a joke about it but inside, I was mortified.” RE Massachusetts Sibling Support Network, 2011

11. Young siblings: How Parents can help Massachusetts Sibling Support Network, 2011

12. College Career Life College, Career, Life “How did I spend my teens?  Helping my mom and dad take care of my sister.  Where did I go to college?  As far away as possible.”   -CR Massachusetts Sibling Support Network, 2011

13. 20 something and beyond Massachusetts Sibling Support Network, 2011

14. Taking on the caregiving role Research shows that siblings who take on “parental-type” roles make very different choices than parents regarding their brothers’ and sisters’ needs. “When my mom dies, my brothers assume I will take over caring for our sister. I can’t say no, but how will I do that?” HR “My parents were very protective of my brother. As I took over caring for him, I did some things very differently. He and I got closer as his world expanded and blended into mine.” ES Massachusetts Sibling Support Network, 2011

15. Siblings as caregivers Massachusetts Sibling Support Network, 2011

16. Agenda • The Sibling Experience • Supporting Siblings Throughout their Life • The Sibling Movement • Nationally • Locally • What You can do • Questions and Answers Massachusetts Sibling Support Network, 2011

17. National level: sibling leadership network Support siblings Encourage leadership Promote family policy initiatives Massachusetts Sibling Support Network, 2011

18. Locally: Massachusetts sibling support network (MSSN) The goal of The Massachusetts Sibling Support Network (MSSN) is to support siblings of people with disabilities in Massachusetts. This support is offered across the sibling’s lifespan and includes providing information, creating welcoming communities for siblings, and improving access to sibling services. Massachusetts Sibling Support Network, 2011

19. What can you do? Massachusetts Sibling Support Network, 2011

20. Agenda • The Sibling Experience • Supporting Siblings Throughout their Life • The Sibling Movement • Questions and Answers Massachusetts Sibling Support Network, 2011