The Role of Siblings in Future Planning Lesley Scott, M.Ed. Robyn Boswell, M.S

Session Goals Learn about current research related to sibling involvement with a person who has a disability. Learn about the Oklahoma Chapter of the Sibling Leadership Network. Become familiar with ways to include siblings in future planning in order to benefit the family and individual with a disability. --Thank you for attending our spectacular session

Who am I? Master of Education in Special Education 7th -12th grade Multiple Disabilities Teacher in Norman Oldest sister Valerie has multiple disabilities Triplet What role do you play as it relates to transition? Teacher, Parent/ Family/ Sibling, OT, PT, SLP, Social Worker, Service Provider

Current Research Research from 1962- 2016: Current Research 2013-2016: 333 articles Current Research 2013-2016: 120 articles Sibling Leadership Network. (2016). Bibliography for Sibling Research. Retrieved from http://siblingleadership.org/research/

Current Research Siblings are involved and are likely to act as caregivers, however they are not included in future planning. Siblings will likely have the longest relationship. Parents do not include siblings because of a “perceived burden upon the non-disabled siblings as they are considered by parents to have their own lives and have already been affected by the family situation” Davy and Haigh, 2008. Davys, D. & Haigh, C. (2008) ‘Older Parents of People Who Have a Learning Disability: Perceptions of Future Accommodation Needs’, British Journal of Learning Disabilities, 36 (1): 66–72.

Current Research Access to information Positive and negative experiences Problems in early relationship and depression “Over 75% of adults with developmental disabilities in the U.S. live at home with families and over 25% of their family caregivers (716,212) are over the age of 60 years (Braddock, Hemp, & Rizzolo, 2008). Yet many families have not done planning or discussed future care with siblings (Heller & Kramer, 2006).” http://siblingleadership.org/research/research-related-to-siblings-of-individuals-with-disabilities/

Current Research 57.1% (12/21) said there has been full discussion regarding future 42.8% say clear future plans exist Questionnaire to 200 siblings on Sibs database Davys, D., Mitchell, D., & Haigh, C. (2010). Futures planning, parental expectations and sibling concern for people who have a learning disability. Journal of Intellectual Disabilities : JOID, 14(3), 167-83.

SLN Sibling Leadership Network National Conference SLN Listserv Facebook and other social media SLN Webinars Research, Policy and Advocacy, Diversity and Social Justice, Chapter Development Siblingleadership.org Recently, Sooner SUCCESS sent two young adult sibs to the Sibling Leadership Network national conference (Celebrating the Sibling Voice) in Hartford, CT. The SLN project was originally funded through collaboration with the Oklahoma Developmental Disabilities Council and Children's Hospital Foundation.

OSLN OSLN seeks to connect adult siblings of people with disabilities with service providers, advocates, community members and others with an interest in serving the disability community in the state of Oklahoma. We seek to ease the transition for adults who have siblings disabilities by connecting them with resources in the community, sharing and participating in research, and by providing social support.

OSLN What we do Informal meetings to interact socially to share experiences, focus on advocacy, share resources Who we serve Adult siblings, providers, family members with interest in person with disability Junior Membership to include those who have aged out of SibShops (high school students)

SibShops SibShops for school aged children 5-15 Recreational activities Trained volunteers Statewide Contact: Robyn Boswell – robyn-boswell@ouhsc.edu Norman Facilitators Amanda Alferos and Lesley Scott– normansibshops@gmail.com

Including the Sibling in Future Planning Barriers include: Involves talking about death Lack of resources Perceived burden THERE ARE TOO MANY WORDS HERE

Future Planning Many siblings say their career was influenced by their sibling with a disability Participate in OSLN as Junior Member Social benefits Shared Experiences

Including the Sibling in Future Planning Starts in school Does not have to be written into the IEP, but parent can include sibling in variety of different ways. Person Centered Planning SHOULD INCLUDE all who would put the person with a disability first Participation, included on team when appropriate

Role of Siblings Networking Advocacy for sib across lifespan Caregiver

Future Planning Whatever your role in planning, share that: It’s okay to talk to siblings about their future as it relates to their sibling with a disability. There is a spectrum of care roles and options for housing, guardianship, financial responsibility, recreation Does NOT mean commitment/ contract Parental refusal to discuss future planning does not have any benefits

Future Planning Talking Points Living Situation Health Care Full time guardian/ caregiver Stay informed. Advocate. Assisted living, group home, independent living Financial concerns Trusts Guardianship Guardianship/ Legal Different types of guardianship Community Involvement

In Summary End of life planning is a difficult but incredibly necessary process, especially for parents of children who have special needs The desire to protect siblings from the impact of having a sibling with a special need is honorable, but not always realistic Honest, age-appropriate conversations including all family members is the best way to ensure optimal life Professionals occupy a unique role that give them the opportunity to encourage families to think about typically developing New state resource in OSLN for siblings

Questions?

Contacts Lesley Scott – lesleym.ed16@gmail.com Andrea Williams- amwilliams1991@gmail.com Statewide Contact for SibShops: Robyn Boswell – robyn-boswell@ouhsc.edu Norman Facilitators: Amanda Alferos and Lesley Scott – normansibshops@gmail.com oksibleadership@gmail.com Facebook- Oklahoma Sibling Leadership Network https://www.facebook.com/groups/500585593612158/