I am here today speaking as both a family member and as a member of the National Sibling Leadership Network. The SLN is an organization of siblings, other family members, educators, and professionals dedicated to the promotion of family support and empowerment for people with disabilities across the lifespan. Our purpose is to establish a network of siblings who share the experience of disability and to connect them to social, emotional, governmental, and provisional supports across the lifespan so we can be better advocates with and for our brothers and sisters with disabilities.
In my testimony today, I would like to address question four put forth by the Administration on Developmental Disabilities: “How can we address the future care giving and support challenges of communities, and the allies who care about people with developmental disabilities?”
Approximately 75% of adults with developmental disabilities live at home with family caregivers, usually parents. Twenty five percent of these caregivers are over 60 years of age (Braddock, 1999; Fujiura, 1998; Fujiura & Park, 2003). Between budget restraints and aging caregivers, it becomes even more critical to enhance natural supports such as siblings as caregivers. But even though most of us know that we are the natural next step in the caregiver/support chain we don’t know how to prepare for that role, our knowledge is limited, and we have little to no access to supports and services.
My brother Coley, is 38 years old and has an intellectual disability. Like many other siblings, I was positively influenced by my brother to become an advocate and professional in area of IDD after watching first-hand his courage and perseverance as he faced daily challenges in his environment. However, even as a professional in the field, I am left with few resources to support my brother as he engages in the third wave of transition from parental care and support to sibling care and support. This is a very challenging transition for my parents and me, but it is made even more challenging by the lack of available transitional support, and my lack of systemic knowledge that my parents have gained through years of advocating on my brother’s behalf.
As a result of similar experiences faced by many siblings, the Sibling Leadership Network has developed a list of suggested policy changes; research initiatives; services and supports; and strategies that the ADD can adopt and/or administer at the national, state, and local levels to better support siblings and subsequently their brothers and sisters with disabilities. Today I will highlight three important recommendations:
1. Redefine the term “family” in legislative documents and policies to explicitly include brothers and sisters to ensure their involvement in all programmatic and systemic initiatives.
2. Include of all types of family members other than parents as representatives on state Developmental Disability Councils. We would suggest one seat be occupied by a sibling representative.
3. Create programs to reach out to, inform, and involve siblings of people with disabilities. We suggest the development of specialized programs to support siblings at all life stages along with including siblings in family trainings; research and grant activities; access to information about available services and supports; respite worker and volunteer training and recruitment; and futures planning.
Providing siblings with services and supports is a low-cost, high impact means of improving the lives of people with disabilities and their families because supported, informed siblings are more likely to remain lovingly involved in their sibling’s lives, particularly when parents are no longer able to act as caregivers. We are dedicated to carrying on legacy of our parents to ensure that our brothers and sisters continue to have opportunities to lead lives of independence, dignity, love, and joy.
I have a vision of an enviable life for my brother that includes a family, a home of his own, competitive employment, and his becoming a contributing member of his community. With the right supports, I know my vision is possible for my brother. However, I along with a nation of siblings need help from the Administration on Developmental Disabilities to make the transition in care giving and support seamless, to improve the quality of life for our siblings and our own families, and to make our shared dreams for the futures of our loved ones with IDD a reality.