Testimony Submitted to Administration on Developmental Disabilities – John Kramer

I am writing as a family member, as a member of the National Sibling Leadership Network (SLN), as a committed professional in the field of disability. I am a brother of two young men, both with developmental disabilities, both of whom have lifelong support needs that will, one day, be my responsibility. 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. Finally, I am a professional who is committed to improving systems to better foster the independence and long term well-being of people with disabilities through employment.
I would like to address the questions put forth by ADD regarding adulthood. It is here that I see a great synergy of family, self-advocate, sibling, and service interest. As a sibling of one unemployed and one very underemployed men in their 20’s- a time when all of us should be working our way up the ladder to success- I see that employment is the key to everything. Even at some point down the road I and my brothers are willing, I will be unable to support my brothers financially. There is no way I can fully financially support two grown men with I/DD. While they rely on government services, in the present climate I think prudence dictates that we prepare as if those services will not be there either in current form or at all in the future. This is not a gloom and doom proposition. It is reality. It is also an opportunity. What I know personally is that my brothers, along with most people with I/DD, will need to take much more responsibility for their own support in the not too distant future. The best and most sustainable way they will do that is if they find gainful employment. They would thrive if they could find a place to meaningfully contribute to society, yet I fear for them as the years are beginning to pile on with little to no prospects on the horizon. The systems that have served them so well in providing for them need to now transcend and better assist them in helping themselves. We need to incentivize work.
With approximately 75% of adults with developmental disabilities live at home with family caregivers, usually parents, most people (67%) with I/DD are not working (Metzel, Boeltzig, Butterworth, Sulewski, & Gilmore, 2007). 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 1) encourage people with disabilities to take responsibility for their own wellbeing to the fullest extent possible and 2) enhance natural supports such as siblings as caregivers. But even though most of us know that siblings 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. Many of us also have noticed our own careers changing over time, only to watch as our brothers and sisters are staying at home with mom and dad, year in, and year out. Employment should be their lifeblood. The financial support they receive through government services is life support.
I am not alone in this experience. I talk to more siblings every day who echo similar sentiments. In my dissertation on sibling relationships between people with disabilities and their brothers and sisters, employment was one of the biggest issues they talked about.
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. I will highlight what I see as the four most important recommendations from a sibling perspective. They are:
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. Foster competitive employment opportunities for people with disabilities. When you do this, you help them to be self-sufficient and that, in turn, helps the whole family while lessening the burden on government services and other scarce resources.
3. 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.
4. 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 people with disabilities employment services are two of the most low-cost, high impact means of improving the lives of people with disabilities and their families. 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. Employed people with disabilities are contributing meaningfully to their families, communities, state, and country. 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 and dignity. We are also dedicated to supporting our brothers and sisters to live their lives to the fullest and most independent as possible. A colleague of mine wrote the following, and I actually think she said it better than I could, she writes:
“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 foster employment opportunities], 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.”
Thank you,
John Kramer
john.kramer@siblingleadership.org